Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 We do..... and anytime has a seizure, his urine pH has risen (frustrating!!!) even if his ketones haven't budged. We use a Chem 10 test strip that tests 10 different things in the urine. I like it too because I can keep an eye on blood in the urine. We've never had kidney stones, but I worry. Kathy On Wed, 28 Jan 2004 00:11:13 -0000 " onegreatmum " writes: > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 We do..... and anytime has a seizure, his urine pH has risen (frustrating!!!) even if his ketones haven't budged. We use a Chem 10 test strip that tests 10 different things in the urine. I like it too because I can keep an eye on blood in the urine. We've never had kidney stones, but I worry. Kathy On Wed, 28 Jan 2004 00:11:13 -0000 " onegreatmum " writes: > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 onegreatmum wrote: > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Leita You can test in a diaper, just buy multistix or labstix instead of just ketone strips. They are accurate for the urine but less so of course than blood. Still better than nothing to get some clues Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 onegreatmum wrote: > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Leita You can test in a diaper, just buy multistix or labstix instead of just ketone strips. They are accurate for the urine but less so of course than blood. Still better than nothing to get some clues Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Sorry about that blank message. I have to jump in here. Urine pH testing does need to be done on fresh urine. Ammonia begins to form in urine immediately upon excretion and will raise the pH in the container and especially in a diaper. Also, I'm very doubtful that there would be a correlation between increased urine pH and seizure activity. Have you been told by your team that there is? I'd really be interested to know the details on that. The only way I can think of a relationship here is if the void occured during the seizure and was tested immediately. > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Sorry about that blank message. I have to jump in here. Urine pH testing does need to be done on fresh urine. Ammonia begins to form in urine immediately upon excretion and will raise the pH in the container and especially in a diaper. Also, I'm very doubtful that there would be a correlation between increased urine pH and seizure activity. Have you been told by your team that there is? I'd really be interested to know the details on that. The only way I can think of a relationship here is if the void occured during the seizure and was tested immediately. > Hi, I would like to know whether anyone tests urine ph? Is this > accurate? Does it have to be done on fresh urine or can you test > urine in a diaper [as I do for ketones]. Thanks, Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 I am working on the theory that increased acidity can control seizures. My neuro started Asha on the diet for this reason. The anti epileptic drugs Diamox and Sulthiame are increase acid levels. The diet does too. I just want to test her ph to see whether there is a correlation between those levels on good and bad sz days. You never know . Leita. > > Also, I'm very doubtful that there would be a correlation between > increased urine pH and seizure activity. Have you been told by your > team that there is? I'd really be interested to know the details on > that. The only way I can think of a relationship here is if the void > occured during the seizure and was tested immediately. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Leita, I see your reasoning, but biochemically, I don't think it works that way. By increased acidity on the diet, it means in the blood... ketoacidosis. It is a metabolic (breakdown of fat into ketone bodies, which are acidic, in the blood. The way to test that is is with arterial blood gases (particularly blood pH and pCO2). The urine pH doesn't necessarily reflect blood pH. While there may be some correlation, urine pH is more about the function of the kidneys. Blood pH ranges are very narrow. Normal is 7.35 to 7.45. Urine pH can actually go down to about 4.5 and as high as about 9.0 (rare) Urine pH can temporarily be affected, usually toward the alkaline side, by some foods we eat (like asparagus). That has no medical significance. Blood pH is not affected by food unless it is induced by the keto or Atkins-type diets, diabetes, or meds. that affect carbonic anhydrase, like the ones you are using. ********************** From an article I have on blood pH and renal compensation-- Therefore pH of the urine falls less when a given quantity of acid is removed from the blood and added to the urine. NH3 is generated from glutamine and amino acids leaving organic acids which are metabolised to CO2 and water, therefore the generation of NH3 does not result in any permanent change in blood pH because the acids produced are easily metabolised and excreted as CO2 by the lung. The renal system controls the volume and composition of extra- cellular fluid (E.C.F.). It manipulates the E.C.F. electrolytes to maintain the (blood) pH at 7.4. In contrast to the rates of change in PCO2 which the respiratory system can produce (minutes) when compensating for pH changes, the renal compensation is slow (days). **************** I've not known anyone who understands acid-base balance to think differently than this. However, I've been somewhat out of touch for a while, so perhaps there's something new that I'm unaware of. Did your team suggest a correlation between blood and urine pH? Cammie > I am working on the theory that increased acidity can control > seizures. My neuro started Asha on the diet for this reason. The > anti epileptic drugs Diamox and Sulthiame are increase acid levels. > The diet does too. I just want to test her ph to see whether there > is a correlation between those levels on good and bad sz days. You > never know . Leita. > > > > > Also, I'm very doubtful that there would be a correlation between > > increased urine pH and seizure activity. Have you been told by > your > > team that there is? I'd really be interested to know the details > on > > that. The only way I can think of a relationship here is if the > void > > occured during the seizure and was tested immediately. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Thanks for that information Cammie. You probably just saved me the $50 I was going to outlay on ph test strips. What are the strips used for then I wonder? I don't have a keto team. I have done this diet with the guidance of parents here like you and am eternally greatful for the support you share. BTW congratulations on your success with the diet and please stay around and keep sharing you knowledge. Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Thanks for that information Cammie. You probably just saved me the $50 I was going to outlay on ph test strips. What are the strips used for then I wonder? I don't have a keto team. I have done this diet with the guidance of parents here like you and am eternally greatful for the support you share. BTW congratulations on your success with the diet and please stay around and keep sharing you knowledge. Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Well , my curiosity will get the better of me now. I am going to have to experiment with this. Do you know whether you can buy test strips that just test ph and are cheaper than the mutlistix that go for $50 here in Oz? Leita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 -- Knowledge wise... I'm not so sure--LOL! The whole acid-base thing is mind boggling, and I know I have forgotten a lot. You have recent " lived experience " . But what you described in makes sense according to acid-base balance " rules " . It sounds like 's kidneys did just what they were made to do. BTW, Arterial pH of 7.59 is quite scary. (as I'm sure you know) The key word in your post is " compensatory process " . Compensated acidosis/alkalosis is somewhat of a different species of the same animal, if that makes sense. Then we can throw comp respiratory alkalosis in there vs. compensated metabolic acidosis... nah, let's not!! How long did it take for him to go from severe acidosis before admission to alkalosis? Not minutes, I'll bet. More like hours or even days. The other thing is... was in a very stressed situation. Under normal circumstances, I would still doubt the correlation would be that meaningful. The ranges are so different -- blood pH being very narrow between acid and alkaline (0.5 on either side of neutral) and urine being quite wide (about 2.0 on either side). But, you know, exceptions to the " rules " certainly do happen. The biggest problem with medicine is that it is based totally on statistics... which it has to be. But, we need to recognize that because something is statistically so, it doesn't apply to everybody...just the majority. Also, when 's urine was highly alkaline and correlated with the motor status, did you have a blood pH value to compare? Depending on when you tested, compared to when the status occurred, it could be very reasonable to see alkalinity in the urine because of chemicals released during the continued muscle activity. I guess my whole point in jumping in here is that I don't want to see anyone misled by potentially false information. People's actual experience is always valuable. At home, even if a correlation is seen between alkaline urine and seizure activity, you don't know what actual blood acidity is at the time. Testing urine ketones has been the ONLY way to test for blood acidity, routinely on the diet. Even then, the correlation between urine and blood is not exact, but it's but it's much closer than pH. Now that we can test blood ketones at home, the opportunity avails itself to get a much closer value, yet. Leita-- the multistix are used mainly in the clinical laboratory or doctor's office to do routine urinalysis... a basic screening test for overall health. ANY abnormality needs further investigation to determine if it is significant or not. Not all the squares are really needed for keto... but they are there. Most keto teams don't care about urine pH because in normal folks, it usually acidic. In ketosis it is usually acidic, too, but there could be exceptions. That would not necessarily mean that blood is also alkaline. It's the kidney's job under most circumstances to excrete an acid urine. The most important square is ketones, obviously. The other two that are helpful are blood (for detetction of possible kidney stones forming) and specific gravity (urine concentration). I use ketostix (one square for ketones) twice a day. I use multistix once a week to screen for blood. To my knowledge, there is no single test strip for blood. If there was, I would use it instead. If I need specific gravity (for instance, when my daughter is sick and I'm concerned about dehydration, I use a refractometer that I borrowed from a lab. If you want to test for urine pH, go to your pharmacy or Wal-Mart and buy pH paper. It comes on a roll that you can tear a piece off or in strips. There is a guide on the package similar to the one on the multistix can. Considerably less expensive than the sticks! Remember, you should test it fresh or the results mean nothing. Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Leita, I agree... the multistix are good to use once weekly just to get a " heads up " in case something is brewing, especially a kidney stone. My suggestion about pH paper was if you wanted to test urine pH daily ... it would save you money. We will also be doing an abdominal ultrasound now, after 6 monts on the diet, to look for kidney and gall stones. Also an EKG to look for a form of cardiomyopathy that has RARELY occured in kids on the diet (I think mostly in " older " kids vs. infants and toddlers, but I'm not positive about that). Anyway, if you have access to those through your neuro, even though you aren't getting help with the diet it might be something worth considering to have those tests done somewhere between 6-8 months on the diet. > HI Leita, > If it were me in your situation, I think I would go ahead and buy the > multistix if possible, because (and I see Cammie has said it too), I think > there is a need for intermittent full screening/testing for things like the > protein, blood etc as warnings of poss kidney stone formation, leukocytes > for infection brewing if unexplained seizure activity creeps in etc etc. > I think I saw someone else post this too - but you can cut the strips to > give 2 skinny ones that do the same job, and that will give you more value > for money, cos yes, they are a helluva price. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Leita, I agree... the multistix are good to use once weekly just to get a " heads up " in case something is brewing, especially a kidney stone. My suggestion about pH paper was if you wanted to test urine pH daily ... it would save you money. We will also be doing an abdominal ultrasound now, after 6 monts on the diet, to look for kidney and gall stones. Also an EKG to look for a form of cardiomyopathy that has RARELY occured in kids on the diet (I think mostly in " older " kids vs. infants and toddlers, but I'm not positive about that). Anyway, if you have access to those through your neuro, even though you aren't getting help with the diet it might be something worth considering to have those tests done somewhere between 6-8 months on the diet. > HI Leita, > If it were me in your situation, I think I would go ahead and buy the > multistix if possible, because (and I see Cammie has said it too), I think > there is a need for intermittent full screening/testing for things like the > protein, blood etc as warnings of poss kidney stone formation, leukocytes > for infection brewing if unexplained seizure activity creeps in etc etc. > I think I saw someone else post this too - but you can cut the strips to > give 2 skinny ones that do the same job, and that will give you more value > for money, cos yes, they are a helluva price. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Leita, I agree... the multistix are good to use once weekly just to get a " heads up " in case something is brewing, especially a kidney stone. My suggestion about pH paper was if you wanted to test urine pH daily ... it would save you money. We will also be doing an abdominal ultrasound now, after 6 monts on the diet, to look for kidney and gall stones. Also an EKG to look for a form of cardiomyopathy that has RARELY occured in kids on the diet (I think mostly in " older " kids vs. infants and toddlers, but I'm not positive about that). Anyway, if you have access to those through your neuro, even though you aren't getting help with the diet it might be something worth considering to have those tests done somewhere between 6-8 months on the diet. > HI Leita, > If it were me in your situation, I think I would go ahead and buy the > multistix if possible, because (and I see Cammie has said it too), I think > there is a need for intermittent full screening/testing for things like the > protein, blood etc as warnings of poss kidney stone formation, leukocytes > for infection brewing if unexplained seizure activity creeps in etc etc. > I think I saw someone else post this too - but you can cut the strips to > give 2 skinny ones that do the same job, and that will give you more value > for money, cos yes, they are a helluva price. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 , There is lots of confusion on the " stix " and the companies that make them don't make it any easier. Are you using ketostix and multistix- 10 both made by Bayer? If so, you should be getting the same value on both, if you are reading them at the stated time... 15 sec. on the ketos and 40 sec. on the multis. On both, the color will continue to darken, so the results are only " accurate " with the correct timing for the particular strip you are using. Why the timing is different on two different test strips made by the same company is stupid, but we are stuck with it. Also, you have to read the color against the can that the strips actually came in because the color is controlled by lot number. Once you change lots, the color calibration can vary. If you are reading the ketos at 15 sec. and the ketone patch on the multis at 40 sec. and getting more than a one level difference, then something is wrong. Any of these sticks are really only qualitative measurements (ketones presnet vs. ketones absent) which have been made semi-quantitative by very smart chemists. They are not meant to be exact measurements by any means. Also, the urine sticks test for acetoacetic acid ONLY, not bHB or acetone. So, no wonder correlation with blood ketones can get tricky. I don't know what the newer home blood test for ketones tests... bHB, I would hope but I really don't know. AND.... in thinking about a single strip for blood, I did some looking and didn't have to go far. They do make a single test strip for blood called.... hemastix. It may not be as sensitive as the multi's, though. I'm going to give Bayer a call, just because I'm curious, now. Don't know if I would actually use it because I want to use the multi's once a week anyway. Cammie > > Re the multistix ketone readings, am I the only one that feels I can't use > multistix for this one? I too usually just use the single ketone strips, > (these ones at least, our govt DO kindly give a script for..), but when I do > a correlating multlistix test on the odd occasion, I never end up with the > same reading. We use the Bayer multistix, dunno if it is the same as other > brands, but it says to read the ketones after 40 secs. Well after the usual > 15 secs used on the single strips, I get the same 'colour' so same reading, > but after 40 secs, it has always darkened past what the single strips are > showing. Have you ever found this? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 , There is lots of confusion on the " stix " and the companies that make them don't make it any easier. Are you using ketostix and multistix- 10 both made by Bayer? If so, you should be getting the same value on both, if you are reading them at the stated time... 15 sec. on the ketos and 40 sec. on the multis. On both, the color will continue to darken, so the results are only " accurate " with the correct timing for the particular strip you are using. Why the timing is different on two different test strips made by the same company is stupid, but we are stuck with it. Also, you have to read the color against the can that the strips actually came in because the color is controlled by lot number. Once you change lots, the color calibration can vary. If you are reading the ketos at 15 sec. and the ketone patch on the multis at 40 sec. and getting more than a one level difference, then something is wrong. Any of these sticks are really only qualitative measurements (ketones presnet vs. ketones absent) which have been made semi-quantitative by very smart chemists. They are not meant to be exact measurements by any means. Also, the urine sticks test for acetoacetic acid ONLY, not bHB or acetone. So, no wonder correlation with blood ketones can get tricky. I don't know what the newer home blood test for ketones tests... bHB, I would hope but I really don't know. AND.... in thinking about a single strip for blood, I did some looking and didn't have to go far. They do make a single test strip for blood called.... hemastix. It may not be as sensitive as the multi's, though. I'm going to give Bayer a call, just because I'm curious, now. Don't know if I would actually use it because I want to use the multi's once a week anyway. Cammie > > Re the multistix ketone readings, am I the only one that feels I can't use > multistix for this one? I too usually just use the single ketone strips, > (these ones at least, our govt DO kindly give a script for..), but when I do > a correlating multlistix test on the odd occasion, I never end up with the > same reading. We use the Bayer multistix, dunno if it is the same as other > brands, but it says to read the ketones after 40 secs. Well after the usual > 15 secs used on the single strips, I get the same 'colour' so same reading, > but after 40 secs, it has always darkened past what the single strips are > showing. Have you ever found this? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 , If I remember correctly Jess is taking Diamox or Sulthiame.. right? These are both carbonic anhydrase inhibitors (which is another metabolic pathway worse to describe than the acid base balance thing). They make the body (blood, actually) more acidic. Very loosely, they do what the diet does, but by another route. Some kids have a really bad time if they are on the diet and one of those drugs at the same time. (As they've recently decided to tell us about Topamax) However, it's not the acidity, itself, that is thought to control seizures in either case. On the diet it's the Ketone bodies that are thought to do the trick. But along with the ketone bodies, comes the acidosis. On the drugs, it's the actual inhibition of the carbonic anhydrase enzyme that is supposed to control seizures (if I read correctly, I'm not really as knowledgable on this one as on ketoacidosis), but again the acidosis comes with it. So, I would say that both the diet and the drugs together might be keeping her pH on the low side. I would be a little concerned about the 7.25, but I'm very cautious. What does your neuro say about it? Cammie P.S. The digestive process takes care of acidity or alkalinity that existed in foods before they were consumed. So, if you eat an orange or a tomato, it is first of all broken down into very small parts that can be absorbed and used. Some molecules of acid may remain after digestion, but will be absorbed into the blood and then.... filtered by the kidneys. > > Thanks Cammie > First time I've seen someone (who had a better sense of what they are > talking about that me, hey thats not difficult lOL) say that the acidity > or alkalinity of foods won't really affect blood ph. > Can't pretend to understand the excerpts you quoted though > Any thoughts on a kid whose blod ph does not normalize to normal rangeon > the diet, but stays acidic, somewhere between 7.25 - 7.32? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 , If I remember correctly Jess is taking Diamox or Sulthiame.. right? These are both carbonic anhydrase inhibitors (which is another metabolic pathway worse to describe than the acid base balance thing). They make the body (blood, actually) more acidic. Very loosely, they do what the diet does, but by another route. Some kids have a really bad time if they are on the diet and one of those drugs at the same time. (As they've recently decided to tell us about Topamax) However, it's not the acidity, itself, that is thought to control seizures in either case. On the diet it's the Ketone bodies that are thought to do the trick. But along with the ketone bodies, comes the acidosis. On the drugs, it's the actual inhibition of the carbonic anhydrase enzyme that is supposed to control seizures (if I read correctly, I'm not really as knowledgable on this one as on ketoacidosis), but again the acidosis comes with it. So, I would say that both the diet and the drugs together might be keeping her pH on the low side. I would be a little concerned about the 7.25, but I'm very cautious. What does your neuro say about it? Cammie P.S. The digestive process takes care of acidity or alkalinity that existed in foods before they were consumed. So, if you eat an orange or a tomato, it is first of all broken down into very small parts that can be absorbed and used. Some molecules of acid may remain after digestion, but will be absorbed into the blood and then.... filtered by the kidneys. > > Thanks Cammie > First time I've seen someone (who had a better sense of what they are > talking about that me, hey thats not difficult lOL) say that the acidity > or alkalinity of foods won't really affect blood ph. > Can't pretend to understand the excerpts you quoted though > Any thoughts on a kid whose blod ph does not normalize to normal rangeon > the diet, but stays acidic, somewhere between 7.25 - 7.32? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 , Seeee.... yes, this is very interesting and someone should do a study of kids like , few though they may be. This is a perfect example of how medicine is so driven by statistics... to the degree that actual clinical experience is pooh-poohed. I've learned something now, too.... thanks! At least your neuro " sees " it, too, and will treat Jess accordingly. The fact that he won't come right out on paper and say it is a doctor's code thing, I swear. I get frustrated with that, too, but I don't think it's ever gonna change. Just be happy that he listens to you and does what helps Jess, even if it's not " the way things should be " . > and he hopes we can eventually get off the diet and manipulate > acidity chemically (with the drugs). And, if what you are saying IS actually the case, it makes sense that might work. Maybe she doesn't need the ketones, just the acidity. That would throw a whole new wrinkle into keto research, though, which is just fine. it was like her body learned > to fight the acidosis and her bicarb was always up even with deep > ketosis - still " low " on the tests but too high for her. She needs to > have bicarb under 17 for seizure control, go figure! > So the diamox made her more acidic again with the diet and we went > another 2 years seizure free. Then bam, the bicarb went up to 17-18 and > the seizures were back. She is just hovering around 17, but never going > below it which is not good for her. Its like her body is too smart. Exactly, . God made our bodies VERY smart. Of course, because of genetic differences, some people compensate better than others. Just like some of us gain weight and others lose when they eat the same foods--LOL So, it seems like the trick would be to calm her compensatory capability just enough to maintain the required acidosis... but no more. The problem with the drugs is that it seems they tend to wipe out the compensatory regulators that would prevent going too far. That's why so many kids are having probs. with Topamax and why Sulthiame is not FDA approved in the U.S. as of yet. I am rambling... sorry. I'm trying to put it all together as I'm typing... probably not so good. I guess the main thing would be to be careful. You don't want Jess in a state of overcompensated anything to the point that she might not come back. (unfortunately) is the expert on that one. But in the end, came out just fine. Not a process any of us would choose, tho! > Sorry for the length, just nice to have someone besides neuro to talk to > who understands what I am talking about > Here is a question for you - with every bout of seizures (they last app > 2 weeks) that has her blood gasses go nutty. I realize some of > that is a direct result of the seizures. But beyond over time and > despite the bouncing she consistently gets more and more alkaline so > even though it looks like good ketosis, she actually moves from somewhat > acidic through normal to alkaline. After teh seizures are done, she > starts falling back to where she was. I don't know if she did this > pre-diet or not. Any ideas?? Yes, a direct result of the seizures, but also the compensatory thing, again. Her body is trying to find balance. If she's acidic, she wants to be more alkaline (actually, normal). So, she will swing a bit past normal to alkaline, then back to acidic, etc. Picture a pendulum that want to hang perfectly straight. During non-seizure times, Jess may tolerate the highly acidic state, because she's moved slowly from normal to acidic and more acidic... etc. Once a stress comes-- a seizure, the body musters all its troops and wants to be NORMAL again... no variation. So, that pendulum will swing back and forth, each swing getting smaller and smaller, until it hangs straight. O.K. Troops called off. Then, the drugs (and probably the diet, too) force her into acidity again, slowly and she will tolerate that until another seizure occurs. My question would have to be...and I don't know, just a question. Could she be eventually getting too acidic and that's what's triggering that first seizure? ANd then, boom, all hell breaks loose?? It fits well with what's happening with the Topamax in other kids lately. Like I've said before, I've forgotten a lot of this stuff. But, I have done a lot of reading in the past year and a half since my kiddo was diagnosed. I bug my doctors for articles that I can digest, literally. I visit the medical library at the University when I have the chance. I do find all of this " stuff " very interesting. It's just unfortunate that some of us have to live with it. You seem to have done your research, too, and like others around here that is commendable if you have little schooling in these areas. When I was in college, our motto was Biochemistry is not for wimps... and it's true. A friend of mine has a daughter that just received her masters in biochem last spring. She asked me for help on one of her projects a year or so ago--LOL! I think she's forgotten more than I ever knew. Gotta say it was kinda fun, tho! Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 We have observed the same. Saro kathy j irwin wrote: >We do..... and anytime has a seizure, his urine pH has risen >(frustrating!!!) even if his ketones haven't budged. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 We have observed the same. Saro kathy j irwin wrote: >We do..... and anytime has a seizure, his urine pH has risen >(frustrating!!!) even if his ketones haven't budged. > Quote Link to comment Share on other sites More sharing options...
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